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Crohn's Disease Forum » Surgery » Terminal ileum fistula surgery


 
05-22-2017, 12:48 AM   #1
PonchoRider1389
 
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Terminal ileum fistula surgery

Hey guys! I've been reading a lot of forums lately and have some questions. I've had Crohn's now for 15 years. 30 years old, fit and active. 2009 I had air come out when I peed. Didn't hurt or think anymore of it. Fast forward to 2016 and I had lots of air and nasty UTI's. WBC over 100+. Multiple hospital stays. Well, fast forward to now. May 22nd 2017. I am scheduled for an open resection surgery on July 27th. The terminal is very narrow and also has created a fistula to my bladder thus causing the UTI's. Also small fistula attached to the Sigmoid but he said that happens and he can pull it off and stitch it. So he wants to resect my terminal ileum, valve, appendix and cecum. I am currently on Humira and Imuran and they are working great but wants me to stop them two weeks before and start up a month after surgery. So my questions are.

Has anyone had this type of surgery?
How was the D after?
How quick before it went back to nomal?
Did you take any meds to help with D and stool formation after?
Should I stop the meds before surgery? Or should I stay on them?

And did anyone have any complications after this surgery?

Thanks guys. That was just a highlight of everything.
05-22-2017, 04:37 AM   #2
Quixote
 
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I had this surgery in August. Only thing I didn't have was the fistula connection to the bladder mine second connection was moving toward pancreas.
D wasn't that bad after. Had normal movements in 4 - 6 weeks I believe. There was some urgency and some blood right afterward, but all that seemed to clear up pretty quickly.
I didn't take any meds after surgery, just used essential oils to help with some of the digestive issues, didn't really want hard stools soon after anyway due to soreness.
The reason they want you to stop the meds before surgery is so that the build up wears off and your body's healing won't be inhibited by them.
The staples aren't too fun but I do feel much better now. Just keep a pillow around you to hang on to right afterward.


I got to try a new pre-surgery method in Akron that is starting to spread around and I think it really did help me heal faster. If you are interested look up ERAS. If you can talk the surgeon in to trying it I think you'll benefit greatly.
05-22-2017, 06:42 AM   #3
ronroush7
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Hi. I had a resection in 2010 where they took the terminal ileum and a small part of the colon. The bladder was not involved. It took a few weeks after surgery for the diarrhea to settle afterwards. I think you should stop the medicine. Sending support.
05-22-2017, 08:23 AM   #4
JessPeper
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Hey guys! I've been reading a lot of forums lately and have some questions. I've had Crohn's now for 15 years. 30 years old, fit and active. 2009 I had air come out when I peed. Didn't hurt or think anymore of it. Fast forward to 2016 and I had lots of air and nasty UTI's. WBC over 100+. Multiple hospital stays. Well, fast forward to now. May 22nd 2017. I am scheduled for an open resection surgery on July 27th. The terminal is very narrow and also has created a fistula to my bladder thus causing the UTI's. Also small fistula attached to the Sigmoid but he said that happens and he can pull it off and stitch it. So he wants to resect my terminal ileum, valve, appendix and cecum. I am currently on Humira and Imuran and they are working great but wants me to stop them two weeks before and start up a month after surgery. So my questions are.

Has anyone had this type of surgery?
How was the D after?
How quick before it went back to nomal?
Did you take any meds to help with D and stool formation after?
Should I stop the meds before surgery? Or should I stay on them?

And did anyone have any complications after this surgery?

Thanks guys. That was just a highlight of everything.
I had an open resection in March. The D after only lasted two weeks. I didn't have to take any medications to get the stool back to normal. They may be telling you to stop your medication because they will slow your healing process. I'm currently dealing with a open wound on my stomach where the stitch knot was located. My surgeon said it is not healing because of the medications I am on.

Best of luck to you!
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3rd Generation

Dx with CD 4/16

Ileocecectomy 3/17

Reoccurrence 8/17


Current Medications: Lialda 4.8g daily, Azathioprine 100mg daily, Prednisone 20 mg daily. B12, Folic Acid, Primal Defense probiotic.
05-23-2017, 01:00 AM   #5
PonchoRider1389
 
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Okay great! Thanks you guys. Sooo would you all say that surgery was worth it? And do you all feel a lot better now? How long did you stay in the hospital after? Was it painful? Did any of you have and complications? If so what?
05-23-2017, 01:20 AM   #6
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I was taking Humira before I had a hysterectomy. My doctor made me stay off of it for like 6 weeks before surgery. Humira kills your immune system. So if you were to catch anything, your body wouldn't be able to fight it off. I don't know about Imuran. I'm allergic to it. I do know the pains of fistulas. If you can get a doctor to open you up to fix it, DO IT. They kept doing minor surgeries and I suffered for 3 years.


05-23-2017, 01:25 AM   #7
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I had MRSA. This was the second time though. My surgery was very different and because it was going to be so painful they planned to put me on the ventilator after surgery for a couple of days. I'm still having pain but after 12 surgeries, you get adhesions and my case is a little bit complicated. Totally worth it. I started feeling sick and then before I knew it I was going downhill so fast.


05-23-2017, 04:21 AM   #8
ronroush7
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I had MRSA. This was the second time though. My surgery was very different and because it was going to be so painful they planned to put me on the ventilator after surgery for a couple of days. I'm still having pain but after 12 surgeries, you get adhesions and my case is a little bit complicated. Totally worth it. I started feeling sick and then before I knew it I was going downhill so fast.
I am sorry.

05-23-2017, 07:49 AM   #9
JessPeper
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Okay great! Thanks you guys. Sooo would you all say that surgery was worth it? And do you all feel a lot better now? How long did you stay in the hospital after? Was it painful? Did any of you have and complications? If so what?
I was in the hospital for 5 days. I'm not going to lie it was painful but I don't have a very high tolerance for pain. My one word of advice when they ask you to get up and walk and pass gas do it. The gas pain is way worse than the normal surgery pain. I had a few complications but they were all with the healing process and my medications are to blame for that.

I would say it is totally worth it!
05-23-2017, 10:42 AM   #10
DEmberton
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I had a fistula to sigmoid colon (that they didn't know about beforehand), as well as the TI and valve chopped out.

Mine was laparascopic; presumably open surgery is going to take a bit longer to recover from. I was more or less back to normal after 2 weeks, though still took it easy for another 4.
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05-23-2017, 12:05 PM   #11
PonchoRider1389
 
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Okay great guys. Few more questions lol. Did any of you have to have a tube in the nose before, during or after surgery? And also I will need a foley where the urologist surgeon will stitch up my bladder. Probably two weeks. Anyone have to deal with that before?
05-23-2017, 12:16 PM   #12
ronroush7
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It seems like I remember a tube in my nose before surgery.
05-23-2017, 01:02 PM   #13
JessPeper
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Okay great guys. Few more questions lol. Did any of you have to have a tube in the nose before, during or after surgery? And also I will need a foley where the urologist surgeon will stitch up my bladder. Probably two weeks. Anyone have to deal with that before?

Breathing tube? They do put that down your throat. I was told it is protocol that any time they do an epidural now that you have a foley in. The took it out the day before they let me come home.
05-23-2017, 04:16 PM   #14
PonchoRider1389
 
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I had a fistula to sigmoid colon (that they didn't know about beforehand), as well as the TI and valve chopped out.

Mine was laparascopic; presumably open surgery is going to take a bit longer to recover from. I was more or less back to normal after 2 weeks, though still took it easy for another 4.
Hey man. Did they just stitch your sigmoid or resect?
05-23-2017, 04:18 PM   #15
PonchoRider1389
 
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Breathing tube? They do put that down your throat. I was told it is protocol that any time they do an epidural now that you have a foley in. The took it out the day before they let me come home.
A nasogastric tube In the nose to the stomach is what I meant.
05-23-2017, 04:19 PM   #16
PonchoRider1389
 
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Breathing tube? They do put that down your throat. I was told it is protocol that any time they do an epidural now that you have a foley in. The took it out the day before they let me come home.
Did you have an epidural? And how was that? Worth it?
05-23-2017, 09:20 PM   #17
PonchoRider1389
 
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Also how does everyone feel after surgery? Did you go back on meds? Has the Crohn's reoccurred any??
05-23-2017, 09:39 PM   #18
ronroush7
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Yes. Crohns reoccurred for me and I never went off of medicine.

05-23-2017, 10:53 PM   #19
PonchoRider1389
 
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Yes. Crohns reoccurred for me and I never went off of medicine.
When did it reoccur? How long after surgery? And what meds you on?
05-23-2017, 11:06 PM   #20
ronroush7
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I had a resection in 2010. Not sure about the timing but I know they found active Crohns at the end of 2015. I just started on Entyvio. I am also on imuran, Colestipol and Lialda for the Crohns. I take Sythroid for my thyroid and Gabspentin for neuropathy.
05-24-2017, 02:46 AM   #21
DEmberton
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Hey man. Did they just stitch your sigmoid or resect?
They didn't remove any of the colon if that's what you mean. I remember the notes said something like "wedge and block" - whatever that is.

I felt great for about 3 months, then minor symptoms started to creep back. 1 year colonoscopy showed some evidence of inflammation in the TI again, but I avoided meds for another year, and after 6 months on Azathioprine it seemed to settle down. Now after nearly 3 years I only have occasional mild symptoms. Hopefully that's how it'll stay.
05-24-2017, 07:30 AM   #22
JessPeper
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Did you have an epidural? And how was that? Worth it?
I did not have the tube in my nose. I wasn't given an option of whether I wanted the epidural or not. I was talk they were doing it, they left it in until the day before I went home with a monitored flow of pain medication. I would say this it's worth it. I guess I wouldn't have wanted to see what would have happened when the pain meds wore off. I imagine it wouldn't have been very pleasant.
05-24-2017, 07:34 AM   #23
JessPeper
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Also how does everyone feel after surgery? Did you go back on meds? Has the Crohn's reoccurred any??

I am still healing from my surgery but overall I feel much better than before! I am still taking my medications and plan to start a biologic to help combat if the disease if it decides to rear its ugly head again!
05-24-2017, 12:22 PM   #24
PonchoRider1389
 
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Sooooo it sounds like to me that everyone feels better from having the surgery. Yes? That's good. I've got two months. Another question did anyone go on a low residue diet a week or so before surgery? Or a liquid diet a week before? I am planning on cleaning myself out like this a week before
05-24-2017, 02:34 PM   #25
JessPeper
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Sooooo it sounds like to me that everyone feels better from having the surgery. Yes? That's good. I've got two months. Another question did anyone go on a low residue diet a week or so before surgery? Or a liquid diet a week before? I am planning on cleaning myself out like this a week before
I had been on a low residue diet before hand anyway. You'll be cleaned out afterward...trust me! lol
05-24-2017, 04:50 PM   #26
PonchoRider1389
 
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JessPeper I was going to ask how long ago was your surgery? And what are you eating right now through your recovery?
05-24-2017, 05:16 PM   #27
JessPeper
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My surgery was 9 weeks ago yesterday. I've been able to eat pretty much anything I care to try. Only thing I've noticed bothers me is greasy foods. I graze most of the day and try to avoid large meals I noticed when I eat more than a child sized portion I get bloated and uncomfortable.

05-25-2017, 12:08 AM   #28
PonchoRider1389
 
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Thanks JessPeper You're 9 weeks out. Sooo how are you feeling overall? Soreness still? Pain still? D still? How is the scar? Fatigue? Any signs of recurrence?
05-25-2017, 05:14 AM   #29
JessPeper
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Overall not terrible. I still have an open wound at the end of the incision. I've been packing for about 6 weeks. My surgery was done emergency so I wasn't able to stop my medications. The D stopped after 2 weeks. I have "normal" bms now. My advice would be to walk as much as you can tolerate, follow the weight restrictions and make sure you have lots of pillows when you come home from the hospital. My whole body hurt from laying in a bed so long the pillows help to get you a comfy position in bed. I would avoid a recliner unless you have someone to help you out of it. You use your stomach muscles too much otherwise. Ooh last drink lots of water.

05-25-2017, 05:18 AM   #30
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Jess, if you are grazing all the time are you putting weight back on now?
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